2011 was, unequivocally, the worst year we’ve had with CHD, and since we’ve been doing this for 11 years now, that’s saying something. We had two hospital visits, three surgeries (one of which was open heart), and a multi-month odyssey of frustration. It’s that multi-month odyssey I want to address.
When No One Agrees
2011’s CHD Odyssey began with bad numbers, and the announcement that the open heart surgery we had dreaded but that we knew would come up eventually was here. The Cardiologist sent us first to the hospital for Cardiac Catheterization and an Esophageal Echo to get more information for the surgeons, and then had us set an appointment with the surgeon to make plans for the surgery. The options presented to us were mechanical valve and the Ross by the Cardiologist.
The appointment 6 weeks later with the surgeon did not go well – he was, in fact, baffled that we were there as he stated that he would not do or perform either surgery (which was the first we had heard of that). Angry and stunned, we went back to the Cardiologist trying to understand what the situation was, and to make a long story short, no one seemed to really know – the Cardiologist had stated the surgery was needed soon. The surgeon stated we could wait six months but even if he did, he would not perform the Ross. No one was on the same page, and once they all knew that, everyone began back-peddling.
We went to our Pediatrician and explained the situation, and expressed our frustration – these were the people we had trusted for 11 years. Their statements did not agree, and nothing made sense – the Cardiologist stated that other surgeons at the conference felt different. When we had asked the surgeon about it, he pronounced that he more or less didn’t care what anyone else said. He was our child’s surgeon, and he would not perform certain procedures, and it was his decision. End of story. Our pediatrician hugged us, and recommended we get a second opinion, immediately, which we did.
All doctors are not the same.
This was a situation we were unfamiliar with. When Jacob was diagnosed, we did get a second opinion but after that, we relied on our local medical team. No one ever told us that Jacob’s situation was particularly complex or challenging, and so we stayed local figuring a doctor is a doctor, and a surgeon is a surgeon.
We were very, very, very wrong. And many local medical professionals will not tell you when your child’s case is out of their depth or is pushing their skills to the limit. No one ever, ever told us that we would get better care and far more skilled surgeons by leaving town. It is something that someone should have let us know. If no one has let you know, then let me be the first to tell you.
After investigating options from traveling to Boston, the holy grail of pediatric cardiac centers, we settled on Houston, as it was three hours away and ranked Ranked #4 in Pediatrics: Cardiology & Heart Surgery . We figured if we had to go to Boston, we would, but since this was three hours away we would give it a shot.
The Process
The process for getting our child seen was rather daunting, and what I am going to outline is what we experienced getting into a world class facility without being referred by a medical professional (which, I imagine, is much easier). I spoke to other folks at Holcombe House and the process seemed fairly similar for all of us not referred there, but who took the referral and upgrade into our own hands.
- Check your insurance and make sure it covers a second opinion, and whether it covers travel to do so. Pick as highly ranked a hospital in your specialty as you can afford to travel to, especially if their choice to treat may require a long term hospital stay, in case your insurance will not pay. Connect with the Ronald McDonald House and find out how to get in it for the trip.
- Call the hospital, and state you would like to come for a second opinion. They will take your information, and let you know that they will want to see every scrap of information before deciding whether to get involved. From there, start haunting your current doctors, and be prepared to hound them – we were told that our surgeon was “re-writing” the appointment notes before sending it, which took him a full two weeks to get to them.
- Wait politely, but keep calling. Within two weeks, we were called and informed that one of the surgeons chose to take our case. Since all those that we met wound up successfully being seen and “upgrading”, I can’t really speak of what to do if you are told no.
- Drop everything and get there as fast as you can when they can see you.
The Result
The appointment we had with the surgeon blindsided and alarmed us in many, many ways.
We were told about an issue with the Mitral Valve that we had never heard of before. Jacob’s stenosis had been repaired twice before, and no one in Austin had mentioned trying another repair a third time – we were informed by the surgeon in Houston, however, that the repair that had been done was not the greatest, and because the most ideal solution would be for Jacob to keep his Valve, he wanted to attempt it a third time.
The surgeon also let us know that he would have no problem performing the Ross, or replacing the valve, and that he saw no reason to wait or why those options would be off the table. When we asked why the surgeon in Austin had been so against them, he politely stated he could not say as he saw no issue. The appointment was diametrically opposed to the experience we had in Austin.
We left the appointment feeling hopeful, as well as devastated – if we had come here first, would we have had three open heart surgeries? Why had no one stated that with Jacob’s repair, the surgeon’s skill and experience was so important to long term outcome?
The guilt was overwhelming. The anger, as well.
We were reminded how rare it is for a repair of this nature to need to be redone the entire time we were in the hospital in Houston as Cardiac nurses expressed surprise that this was our third time at the dance. A second time is rare. Apparently a third time is unheard of.
In the end, the surgeon performed the repair, and we did not need the Ross or the Mechanical Valve. The surgery was 8 hours long, double the length of any surgery that we had in Austin. The surgeon’s description of it made it clear that it was extremely tedious, painstaking, and very challenging. But, he said, it was the best thing for Jacob to keep his own valve. Even though the surgeon had a few moments where he thought perhaps he could not do it, and even though he warned us one mistake would destroy the valve, he said that he felt that for Jacob he had to try.
We may be wrong, but we believe that the surgeon in Austin simply did not have the skill to do the best thing for Jacob – and we believe he was simply too arrogant to admit it. We thank him for his arrogance, condescension, and unwillingness to operate, though – without it, we never would have gone to Houston and we have no doubt our outcome would have been different. Especially since the “best” pediatric cardiothoracic surgeon in Austin was unwilling to consider what Houston actually accomplished.
How do you know when it’s time to stop accepting and time to start fighting harder?
Unfortunately, I don’t know – for us, it was glaring. We were getting one story from the Cardiologist, one story from the surgeon, were told of other local surgeons with differing opinions, and so we were able to tell that there was a huge flashing warning light that something wasn’t right. We had no choice but to stop trusting, and start demanding answers that we could be satisfied with. If you’re not smacked in the face with it, it may be harder to discern that it’s time to upgrade.
If you feel deep in your gut something isn’t right, if what the specialists are all telling you doesn’t agree, if you just feel something tugging at you that something is missing, if you are not 100% comfortable, get a second opinion and get as world renown and highly ranked a second opinion as you can possibly afford. If you can’t afford it, there are charities that can help. Do a fundraiser. Call the press. Do something.
As difficult and financially tough as it is, one of the biggest and most involved conversations we had with other parents was how few of us were told that our kids had exhausted the local expertise. Many of us had to fight for the referral, and many of us had to do it ourselves. Most of us were not told, and those that were usually were told when it was almost too late.
If something deep within you stirs and hints that you need to get a better opinion or better care, do it. Don’t wait for them to tell you it’s time.
